Monday, January 4, 2010

possible breakthrough???

Wow!! Today has been a very stressful and emotional but possible answer kinda day.

Jeremiah has been very volatile and scared a whole lot of today but once again his speech is clear and he is somewhat understanding. We had a cute thing happen st Starbucks. I took Jeremiah with me to run some errands and afterward we went to Starbucks. Chris wanted a white peppermint mocha. It was the first drink handed to me. I decided to try it. It was nasty. (I hate minty drinks or ice cream). I expressed my disgust and it freaked Jeremiah out. He instantly said" mommy this is a bad Starbucks. We need to leave right now." I told him its ok I just hate mint but he kept getting very upset insisting we need to leave. Then he said Mommy they put worms in daddy's drink. lol he was so upset and concerned I couldn't convince him otherwise..Thankfully he drank his own hot chocolate.

So I am not sure what led me to read about mitochondrial disease. But I did. What I found shocked me very much. Jeremiah fits into it very much so. It freaked me out. It would be an underlining thing that would explain so much that no one has been able to put together. The developmental delays, speech regression, epilepsy, Gi problems, poor muscle tone, fine motor issues, lack of ability to sleep and eat. We need to be tested. there are only three centers in the us that specialize in this. One of those is UCLA. So I have been emailing Dr koh back and forth all day and she agrees that he needs to be tested and needs to see a metabolic specialist. WoW!!! She is trying to get us inpatient but it might have to happen out patient. I am terrified, my stomach is in knots. What if the trip leads to more dead ends, more unanswered diagnosis. Or what if they find something like mitochondrial disease, totally untreatable, only can use good nutrition and exercise and sleep to slow it down. I am terrified and I need to pray. I really think he may have this. Several years ago Dr Wang started doing metabolic testing and he had something called pyruvite(or something like that) test high. I didn't know it but that is very much so a red flag for this. We never followed through on it because I think that is when we went to Minnesota.

I seriously need my friends to pray like never before. We need answers and for the drs to listen. Something is very wrong with Jeremiah and we need help. I need Jesus to heal him first and foremost. Please please pray for Jeremiah.

Tonight we are off to the Y to go swimming. So looking forward to that.

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